ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: danijake on December 20, 2007, 02:41:23 pm
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I think I will do my own head/neck transplant. My Dr won't give me the med. I want, and I am dying. :'( Actually crying because I have a pulsating headache. He's making me wait until Jan 8 to talk about adding the med. I just want to NOT get a bleeding ULCER from the Ibuprofen. :'(
I can't go to work,I can't walk straight and my head and neck are KILLING me. Can't sleep, so I guess I have to SUFFER.
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I would go back to your drs and insist that he give you something for pain. You SHOULD NOT have to be in pain. HUGS to you and I hope the dr gives you something for your pain.
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There's no reason you should have to suffer until January 8th! He should at least offer you something to help relieve the pain. I'd say go back there too. He gets paid to help people - he should least make an effort.
And if you perfect that head transplant - I'd like to look like a supermodel with 2 functioning sides to my face. And maybe blonde...what the heck.
Feel better!
Lori
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Blonde hair,great idea! I already have the blue eyes, so I'll have to keep those! And no breakouts...flawless skin and perfect hair(like the girls in the shampoo commercials).
I called back (the Dr) and they're supposed to call me. I may be going to the ER if this doesn't quit pounding.
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Ice pack on the back of the neck, maybe?
Nothing wrong with going to the ER, though I prefer my local Urgent Care--less waiting and cheaper.
Ask the darn doc for some flippin' hydocodone till he can see you in Jan--ooorrrrrrrr--do like I do and be a squeaky wheel and b__ch till you get an appointment in the next few days. Either way, if you are going for Topamax, it will be a loooong time til you see any results--it takes months to work and is kind of a committment to try. Dr Stephen DSilberstein, world renown headache expert, says he gets good results with about 50% of his AN headachers with it, which, to us, is huge, because our headaches are notoriously medication-resistant. Google him--he's published tons of stuff--Not now, after the headache goes away!
Feel better!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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I may not need that head transplant after all.I woke up headache free today! ;D I am hoping and praying it stays that way. so far so good. I posted this on AN Community under "No headache?" I don't know how to transfer this, so, I'm...well, ya know. I'm going to pick my son up from my momma's in a couple of hours. Wish me luck!!!!!!! ;)
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Almost 5:30 PM and still no headache! My neck sure aches, though. But I can handle that! ;D Merry Christmas. Be back next week.
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Danijake: I went a year with severe pain in my neck (was seeing a chiropractor) and occasionally in my head before my AN was diagnosed. The pain in the neck was from the tumor pressing against my spinal cord. Having this type of pain is ridiculous, please call your Dr and request something. You should not have to wait another week for reliief.
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Dani,
My empathies for you. My headaches have been around a long time now but hopefully yours won;t be. As Deb said, put the acid on your quacks. get a second opinion. These guys have no idea the pain and suffering you are going through. they sau they do but how can they unless they have experienced it themselves.
Good Luck
Laz
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I went to the Dr today and he wants to send me to a pain Dr. Any feedback on this would be great. I told him I'd let him know. He didn't like the idea of the Topomax right now, so...maybe someday the headaches will become tolerable. HOPE :)
Thanks for the replies. It really helps.
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I'm just wondering why he wouldn't prescribe the topomax for you? I've been reading this post and it makes me so angry. The treatment you are getting is just very sad and I'm sorry you have to go through this.
I agree you should get a second opinion. I'm not sure about the pain Dr since we have not experienced this type of treatment with my son's headaches. That being said I think I personally would give it a try. The worst that could happen is that they will do nothing and you have wasted your time once again. From what I have read though it sounds like this is usually a good place to start.
Did your doctor give you anything in the mean time? I really hope that he/she did. I'm just so sorry that you have to go through this. :(
I'm sending you a kiss to your forehead :-*. 16
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Hi Dani,
Well, as Capt'n Deb noted, I've also been hearing good things about Topomax for the control for headaches. I know Deb has cluster headaches and she can further share about how it's been working for her. I have not tried it yet, but 2 of my dr's want to send me to Faulkner Hospital in Boston to their Headache Clinic to see if we can nip mine as well (mine are caused by 2 ailments... but I can pretty well determine which is causing which headaches). I am a believer in listening to what the pain clinics have to say, then make my decision from there... maybe a thought?
due to all the meds I'm on for my lovely trifecta of issues, my GI dr has made sure I'm on Rx Prilosec to make sure my stomach is ok. due to one ailment, I have an issue with acid buildup/backup, so the Prilosec does help in my case. I get Rx form since it's less expense than OTC on my insurance plan.
since 16 is giving out forehead kisses, I'll provide the huggles and hope you are feeling better soon.
Phyl
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Dani,
A lot of people have had good luck with the pain/headache clinics, so I don't think you have anything to lose by going (unless your insurance doesn't cover that - then you'd have a lot to lose!). There might be a reason why your primary doc doesn't want to try the Topamax right now, but you can always mention it when you go to the pain dr. and see what he has to say.
Good luck!
Lori
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dani,
there are a plethora of drugs to potentially try. Neurontin is one that I'm on but there are loads. Topomax seems to be the current favourite at the moment. One specialist that i saw who deals in headache pain prescribed Topomax for me. the only concern is that it can cause Glaucoma. i did try the drug for a few weeks but my eyes sarted getting watery so I stopped. At that point the pressure in my eyes was around 19 (20 is deemed to be the critical number). Since i stopped that drug, i recently had my eyes checked and the pressure is now 15. Topomax is not for me but i am pleased that it helps others.
You need to get multiple opinions until you find a quack that will give you advice that you think is right. pain clinics - yep, try them (depending on your finances of course).
cheers
Laz
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Dani, which doc was this--your PC, the surgeon who did your surgery, or your neurologist? Did you mention Silberstein's headache workshop at the ANA symposium? My suggestion before a regular pain clinic is to see a headache specialist at a headache clinic if you can. Believe me--headaches like this never become tolerable without the right help.
Extra kiss on the forehead and big squishy hug,
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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Now this is just peeing me off! I bother to spend the money to go to Philly to talk to Dr Stephen Silberstein to gather information from the best in the world on these danng headaches and what meds are the best to use to fight them. I bother to share this information with other patients who are bothering to log on to this site to get help. They take this info to their docs. Are their docs bothering to do this research? Are they talking to Dr Silberstein about how best to treat these AN post-op headaches that he sees alot of? Or at least bothering to read his published material. Apparently not! Topamax is the first med he tries! I feel more informed about this very specific condition than some of the professionals I've talked to. I'm not saying that everyone that has post-op headaches should be on Topamax, but as a preventative it should at least be considered. My rant!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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*hands Capt'n mug o' grog, pats on shoulder*... It'll be ok, dear... there, there.....
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I guess I don't understand either. When my son had the headaches post op nobody told us about the topamax either we just happened to receive it because he was hospitalized due to a seizure and he was having to many side affects from the first meds he tried. We were thrilled that after 1 year of these headaches he started the topamax and within 1 month they were gone completely! Maybe it was because he was a pediatric patient still. Maybe it was because of all the brain damage done due to the stroke. Maybe it was because his brain was so swollen. He has aged out of childrens hospital so I can not ask them. I guess I will never know. All they could offer him was heavy duty pain medication which did not work as well as the topamax and caused problems with him being able to function in his rehab activities. He could not take anti-inflamatoris or imitrex due to the blockage in his middle cerebral artery. I was helpless in trying to find a medicine to help him. I wish I had read more on this site back then. Captain Deb all that I know now about headaches I have learned from you. So keep posting you are helping me more than you will ever know! Here I go singing again.........Tell me more, tell me more thanks to grease and Olivia Newton John. :o 16
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I just don't want Dani to go through the three years of hell I went through before I found the kind of help I needed. Even though I'm convinced that my headaches partially went away on their own at three years, had I known at 6 months what I know now, I know I would have benefitted from seeking help from the headache specialist I work with now (who would have put me on Topamax from the get go--the reason he didn't is because I had tried it before and couldn't tolerate the side effects--thank you Dr S for teaching me how to take it)
Pain clinics are great at dispensing narcotics--headache clinics don't do that--they focus on preventatives. At least that has been my experience.
Dani--ask your doc to refer you to a headache clinic, please! I travel 3 hrs to mine and it is worth it.
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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Dani!
I saw you had your surgery in Houston and look what I googled up!
http://www.houstonheadacheclinic.com/ (http://www.houstonheadacheclinic.com/)
Can your doc give you a referral there? Or do you even need one? Sounds like a state of the art place to me! Give them a call!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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Good on ya Deb,
Danni,
Sack your quack and don't ask him for advice, tell him what you want done. I have had too much quackery applied to me to be "totally in their hands". And for my cynical side, too many of them after after the $ first. Like a neuro i saw, he said, we have a number of options and try this fiirst. i asked him what the other options were and he said, lets see how the first one goes and then we'll discuss the others - yeah and $380 per visit later. No thx. $$$$$$ hungry.
Laz
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Dani,
I have not been on line much with the holidays, but I really understand what you are saying about the head and neck pain. I had my surgery back on May 1st, and my surgeons still keep telling me to "give it time." I can make it through work, but that is it!! It takes everything I have just to recover to make it back to work--I'm unable to get anything done around the house. So, I went to my family doctor, and complained about the neck and head pain and instead of getting information on a headache clinic, I was referred to a spine clinic. But I think I will take the advice of others and push for a referral to a headache clinic (hopefully one that knows about headaches after AN surgery).
I, too, worry about the effects of taking Motrin (usually about 400-600 mg 3-4 times daily), and that does not count when I also use Midrin and/or Excedrin Migraine. I am worried that I will be like Captain Deb and go through years of this horrible pain.
Good luck with your headaches!!
Tonya
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I am not going to the headache clinic I fought so hard to get an appointment for because of the $$$ issue as well. Bottom line is..... the neuropsychologist I can't get around seeing first requires a payment of $425 up front and doesn't accept any insurances. My personal choice has an out of network $300 deductible then pays 50% of anything over the 300 which means I put out 425 then get back 62.50, and each time they tell me I need to see him again, I have to find a way to come up with the $$ up front then get reimbursed half. What part of, my income is limited because of my situation which is why I'm seeking treatment, don't they get? Besides which I've been on the topamax for about a year now and I haven't really found any complete relief from these headaches. I'm extremely glad for those people it is helping, but I need to look for another approach or just go on dealing with them like I have for the past 30 years because I am really just plain sick and tired of doctors at this point in my life! Just like Laz says, try this first and come back in X days and pay me $$ and if that doesn't work we'll discuss the other options at that point. No wonder so many people are addicted to pain meds. It's really just easier!
~Karen
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Tonya-
Be very careful with that motrin--it is ibuprophen, right? Advil is another name for it. I was taking it in large quantities for about a year and ended up with a permanent stomach injury--a thickening of my stomach lining which has sent me to the ER with gastritis a few times and to the gastroenterologist many times. I can no longer even take 1 ibuprophen or other NSAID without severe stomach contractions and cramps and have to take an expensive med called Protonix when I get a flare up. I can't eat anything spicy, can't eat large quantites (a shame, cuz I love to pig out.) I thought I was being careful--not taking it on an empty stomach. It can also cause rebound headaches.
Get to the headache clinic first is my suggestion--the first thing they will do is get you off the motrin.
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/happy_face_mummy_goofing_around_md_.gif)
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I did the same thing as Captain Deb with the motrin so you do have to be careful. Is that the only medication that you were given? I guess at this point all you can do is suffer? That just sucks and all I can give you is kisses to your forehead. :-*16
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Well, in addition to the Motrin (if the pain gets really bad), I also take Midrin (if I can nap) or Excedrin Migraine (if I need to stay awake.) The doctors also gave me Percocet and Valium for the neck spasms (which I cannot take when I work). Luckily, I only work 3 nights/week. Unfortunately they are 13 hour nights, so I spend 1 1/2 to 2 out of my 4 days off recovering from work.
Well, I went to the spine clinic yesterday, and got a referral to a headache/pain specialist. So that appointment is Valentine's Day. So hopefully I will get my meds changed around and start feeling better!!
Thanks everyone!!
Tonya
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Tonya what did the spine Dr say? I will be waiting to hear back from you after Valentines day to see how that appt went. Take care until then. Kisses to your forehead. :-* 16
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Has anyone heard from Dani? I was just wondering if she is ok. Thanks 16
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I am so sorry!! I don't have internet at home. I went back to my house when I got Jacob back from my mom. I only get online once in awhile now. It was the Neurologist saying all this stuff. He also told me not to believe everything I read on "those online discussion forums". Kiss my...DOC!!! I think I will call my ins. co. and ask if I need a referral or if they even cover a headache clinic. Thanks for the link Deb. It sounds pretty good to me. I've been taking 4 Ibuprofen every 4-6 hours for 4 months. Okay, time to stop, I know. I'm on Neurontin every 8 hrs and Max-Alt when I have to go to work and I have a bad headache. Ibuprofen just really helps tone down the pounding. Thanks for all the huggles and kisses on the forehead! I'm okay, just "out of pocket". Gotta go. I just jumped on my babysitter's computer when I got off work. Got to take the kid home and feed him.
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Dani I am sorry that you have such an uncaring Neurologist. I guess it is to much for him or her to say I don't know but let me find out for you. I think they should stop and listen to their patients especially when so many of them have the same symptoms they can not and should not discount these headaches. I am getting angrier by the minutes what arrogance. I do not think I would go back there. Your Neurologist feels the need to attack us so to speak that is just sad and maybe you can recommend sensitivity training if you ever see him or her. Please let us know when you can what is happening. !6
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When they had me on ibuprofen for pain and inflammation they also had me on prilosec to guard tummy... it can be
purchased over the counter ...but I get a months worth for $7 if it is written as a prescribed drug and 8 tablets
are around $20 over the counter here
My insurance is resisting paying for a head ache doctor til a year is up... I would like to give the rep a good old
post AN surgery headache and tell him to deal with it for a year...or now 5 more months and 11 days ...
Headaches that start with neck and shoulder muscle tightness and proceed to head I can usually knock out
with Tylenol in a big dose... the ones that are migraines like that come with in are still not going away til I get
heavier duty stuff in me but thankfully are not as often... but they are longer last and more intense...
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Dani, my advice would be to call the headache clinic, ask if they need a referral and have them contact your insurance company. It's how they get paid. Don't sack your quack quite yet even though he sounds like an utter bullying jerk. Apparently the experience of other AN patients doesn't mean squat to him nor does all the published information out there on rebound headaches, which is probably a part of your problem, based on my experience with ibuprophen .You may need him for the referral and it could be months before you can get in to see another neurologist.
Please don't give up until you can find yourself a headache specialist!!!!!!!
Don't $%&*around like I did for three years with inept medical professionals, get addicted to narcotics, permanently ruin your stomach, and become severely depressed!!!!
Big red warning flags for you Dani!!! My awful experience has got to be of benefit to someone!!!
Big smooch on the forehead
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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Calm down 16, don't be upset. I'm the first one he's seen with these headaches. So I figure he's got some learnin' to do!! He's got potential, I can feel it in my gut and I always follow my gut!
My ins doesn't cover headache clinics. And right now I want to get my neck and back realigned and that's $208 a month because...My ins doesn't pay for chiropractic either!!! I was told to take prilosec along with ibuprofen, but the Dr wouldn't give a script because it's otc.
I guess I'm getting used to the Drs' actions and reactions on this matter, because I'm unusually calm right now when normally I'd me really mad. Huh, an epiphany ::)
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I was told to take prilosec along with ibuprofen, but the Dr wouldn't give a script because it's otc.
My doctor writes it out as a script because it is so high OTC... and my insurance picks it up...it would
run me $75 a month OTC ... if the cost is a problem for you I would tell him so and ask for a script...
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Some docs won't write a scrip for things that are available OTC. Nexium is not OTC, maybe if you explain that it would help if you can get something on your plan, and you know nexium is not yet available OTC, maybe he will write you a scrip for nexium. I have major stomach problems for years of taking too much excedrin, prior to AN, and ended up with a perforated ulcer. Was first put on prilosec and when that went OTC, I asked to be put on nexium because prescription meds are cheaper for me than OTC. I hope that made sense and will help!
~Karen
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Don't forget to ask your doctor (or the nurses) for samples of the medicines they put you on. I can guarantee they have a whole room full of samples left by drug reps and it doesn't cost them anything at all to give them to you.
I worked for a small doctors office in the middle of nowhere a few years ago, and we had a whole room, top to bottom filled with samples. Most patients don't know about it so they don't think to ask for them. And if they don't give them out before the expiration date, they just get thrown out, so you might as well use them. They might not give you too many, but even a week's worth can save you some money.
Lori
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Yeah, what Lori said! ;)